Privacy Concerns Prompt VA Hospitals To Withhold Cancer Data

Department of Veterans Affairs officials are citing patient privacy concerns in their decision to stop providing states with information on cancer patients treated at VA hospitals, a move that researchers say could hinder the national cancer surveillance program’s ability to accurately collect cancer statistics, the New York Times reports.

Hospitals are required by state laws to submit data, including a cancer patient’s name, address, age, race and medical history. The information is then used to compile cancer rates and help researchers track statistics.

VA in August instituted a new national directive that sets conditions for state use of patients’ personal data and has said it cannot provide data until states sign the directive.

The directive states that any researcher who wants to use the personal data of VA patients must either get permission from the VA’s undersecretary of health or find a VA researcher to collaborate with and get permission from the hospital’s ethics board. The directive also requires patient information to be encoded to prevent unauthorized access.

{The VA has a simple and reasonable step to guard the privacy of every veterans’ cancer data. Requiring states to get consent from the VA’s Undersecretary of health or find a VA researcher to collaborate with before accessing such personal health information are helpful until it becomes simple and easy to ask every veteran for electronic consent to use their health records about cancer treatment. “Smart” technology exists today—independent electronic consent management tools—that allows every American to decide when and if to share their sensitive health information for research. We must pressure Congress to restore our control of personal health records. Before we share our health records, we need to be certain that the information is secure, that the researchers will guard it, and that it will be destroyed when the study ends. Population-based research does NOT require identifying information. Any need for identifiable health records should meet a very high standard to prove why the study cannot be done on de-identified data.}